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alicia83
04-30-2009, 12:13 AM
Hi!
I'm Alicia & am waiting to see a specialist as my doctor thinks I have SLE.

It started in February this year, with a strange rash on both of my legs (the butterfly rash), I was totally fatigued and spent nearly two weeks in bed with terrible aching joints and limbs, very high temperature & just feeling terrible.

The doctor suggested blood tests as he was worried that I may have ross river fever. The blood tests showed that this was not the case but my ana was 640 which he thought with the rash and my almost arthritic pains that I may have lupus.

I am booked into see the specialist on the 13th of May at an Immunology Clinic at a hospital here.

I've been doing a lot of research on SLE and have noticed that I do have some symptoms - irritable bowel, fatigue (i'm always always tired), still having the aches & pains, slight pains in my chest and I've been put on anti-depressants as I've been very down lately.

My quality of life has certainly changed since February and I'm hoping to never see that rash again as that is when I was at my worst.

Any help or ideas or anything really would be fabulous. :yes:

gina
04-30-2009, 04:30 AM
When you go to doctors take pen and paper. also before you go keep a journal of all your symptoms the dumbest one could be the most important one, anything that is not normal for you. make sure when they do blood work they do a full screen so you don't have to be poke more than once.

and if you do have it this site is wonderfull. the people here are very knowledgeable and you can vent.

keep us posted when you get labs back, until than try to think positive, if you have sle like most of us its not the end of the world you just have to adjust your world.
and everyone here is here for you.:wave:

mountaindreamer
04-30-2009, 05:00 AM
hi alicia83,

gina gave you some great advice, and this is an example of the many ways that this group has helped so many people. There are members who have a wealth of information and they are here to share this kowledge with you. You will find compassion and guidance among the members, and i am glad you found us.

do you have an appointment with a rheumatologist, this is the dr. that diagnosis and treats sle. good luck, keep browing around the forum, and join in with us whenever you want.

Angel Oliver
04-30-2009, 04:16 PM
Hello and welcome! Glad you found us and i hope we can all in some way help you along this journey. Sending you hugs.
love
Angel.xxxxxxxxx

wrightrs
04-30-2009, 04:50 PM
Nice to meet you. You are so welcome here. Make yourself at home.

alicia83
05-03-2009, 07:02 PM
Thankyou for all being so welcoming!!

One thing I forgot to mention in my original post is my hair! Oh, it's horrid!! Every morning after doing my hair my bathroom is covered in hair and my once beautiful hair is very thin & fine due to it all falling out.

I'm so scared that I'll end up bald!!! :hissyfit:

froggal
05-04-2009, 12:11 AM
:grouphug: Welcome to our home!!! It sounds like you have been thru a lot. There are many people here that can relate and understand! I am so happy that you have found us! The members here are awesome people who will always listen and give you great, sound advice. I hope that you enjoy being with us!! Always a friend ~ Angie

AyahsClan
05-04-2009, 12:16 AM
Thankyou for all being so welcoming!!

One thing I forgot to mention in my original post is my hair! Oh, it's horrid!! Every morning after doing my hair my bathroom is covered in hair and my once beautiful hair is very thin & fine due to it all falling out.

I'm so scared that I'll end up bald!!! :hissyfit:

Awe... your not going to end up bald! It is scary though I remember how it felt.

I used to lose lots of hair too, but now not so much. Mine is baby fine anyway. It may be just a temporary reaction. Mine always grew back. I am extremely chemically sensitive to just about everything they put in regular hair products. I actually use a very pure bar soap called Auromere, then I run a little bit of Weleda rosemary oil through my hair. I also use only real henna powder for coloring now and it adds body too. Women compliment my hair! They think it is naturally Henna red.

There may be a vitamin or mineral your body is low on too. During my newly diagnosed hair falling out years I used a product called Hair Skin and Nail formula from Enzematic Therapy. I think B complex Calcium Magnesium and zinc in the proper ration helps too. Make sure they check your thyroid.

mountaindreamer
05-04-2009, 04:46 AM
hi alicia,

my hair goes through periods of falling out, however, it always grows back. I marvel at the little new hair particles sticking up from my scalp.

I take vit. b injections, calcium with vit. d, and folic acid....all to try to reduce some of the various results of lupus.

BadFlareDay
05-04-2009, 07:19 AM
Hi Alicia, welcome to the site. You'll find a wealth of information here.

alicia83
05-04-2009, 06:48 PM
Thanks for all being so welcoming :yes:

My appointment is just over a week away now so I'll just wait and see what they say...

wrightrs
05-04-2009, 07:29 PM
My hair comes and goes too! Hope you had a great weekend.